Thursday, December 6, 2012

cancer, cancer, cancer

So here’s the deal. I just had my 19th month anniversary also known as my cancerversary.  It actually passed without much notice or fanfare. No balloons. No cake. Normally I’m pretty aware of the 2nd of each month. But this is getting to be old hat. Although this week was a reminder of the dealio.  My port has been red and irritated. The concern was infection or that it was knocked out of place. Out of place means that it’s not totally connected to a main artery into the heart. Weird to think about. My port has become my security blanket and the prospect of needing to have it removed was something I didn’t like.

We did some testing and there are no issues. The pain and swelling are gone. So after a two day delay I’m getting my maintenance chemo. I hate the delays. This delay has been two days of nervous energy and anxiety. Apparently this is a common feeling among cancer patients.

But now really here’s the deal: when do I stop talking about cancer and myeloma? I’m 19 months and counting. I’m feeling good. I’m back to a fairly normal life, with a few little tweaks.  Before I started on this journey if you had asked me about cancer and more specifically cancer treatment. I would have said it sucks, and I would have said people either have a few months of treatment and go into remission or they pass away. I had no idea that treating cancer can go on for years and years or even forever. Sometimes you’ll hear on the news about someone who had been battling cancer for 20 years. I never quite understood how that can be.

I think I understand now.  I’m going to be dealing with myeloma forever. It’s a chronic thing that has the potential to flare up at some point.  Hopefully if mine does flair up, we’ll be closer to a cure.  But 19 months is getting to be a while. How do I describe where I’m at?  At work, most people assume I’m back to 100% health since I’m there all the time. Friends and family continue to ask me how I’m doing. But frankly, I feel a little weird sometimes answering that question. I assume or worry that folks are tired of hearing about it. Although I don’t really talk about it too much.  But I am also sort of tired of hearing myself.  I block it out pretty well at this point.

Last year, I was talking to Erin, my cancer coach, about how I was worried I’d always be identified as someone with cancer. I worried that cancer was my new identity. Erin got me to see that cancer is just part of me and is only a small part of what makes me who I am.  Her message was to not let cancer be my identity. That made sense. But right now I wonder if it does make sense.  How do I avoid it? As I’ve said before, everything I do or eat or drink might impact me. I still do chemo. I’m at chemo as I write this. According to Berenson and Phan, I’ll probably always be doing chemo. Myeloma hovers over me.  I’d rather it didn’t and at times I do forget about it completely. And I suppose that is how i should be. People don’t sit around thinking they may get hit by a car or fall off a building or choke on a ham sandwich.  So why should I sit around and wait for my cancer to come back. Tuning out that voice in my head is the trick.

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.